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Taylor and Francis Group, Medical Anthropology, 5(34), p. 442-455, 2015

DOI: 10.1080/01459740.2015.1035782

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“It Gives Me My Freedom”: Technology and Responding to Bodily Limitations in Motor Neuron Disease

Journal article published in 2015 by Amanda Pavey, Narelle Warren ORCID, Jacquelyn Allen-Collinson
This paper is available in a repository.
This paper is available in a repository.

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Abstract

People living with Motor Neuron Disease (MND) experience profound and rapidly progressing impairment. In order to maintain their physical and social functioning, people so affected employ a range of technologies and technological aids (body auxiliaries) to enhance their life and maintain wellbeing. Using a phenomenological study design, we explored the experiences of 42 men and women who had been diagnosed with MND. Although many participants initially resisted the adoption of aids (often-electronic devices that enabled continued participation in daily life) or tools (the instruments that allowed achievement of specific tasks), such technologies offered a way for people with MND to overcome, to some extent, the limitations posed by their physical degeneration. Through generating a sense of ‘normality’, these kinds of ‘enabling’ technologies promoted social engagement and the maintenance of valued relationships or activities. Technologies can provide people with MND with some positive experiences within a way of being-in-the-world that has become so difficult and challenging.